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Maryland Cancer Registry STATE OF MARYLAND DHMH Maryland Department of Health and Mental Hygiene 201 W. Preston Street • Baltimore, Maryland 21201 Martin O’Malley, Governor – Anthony G. Brown, Lt. Governor – John M. Colmers, Secretary Family Health Administration Russell W. Moy, M.D., M.P.H., Director – Joan H. Salim, Deputy Director February 18, 2010 Dear Local Health Officers: The Maryland Cancer Registry (MCR) is pleased to announce the release of data on invasive and in situ cancers and benign brain and CNS tumors with diagnosis dates 1996—2007 to Local Health Officers. Enclosed you will find a Data Dictionary describing the data. Each jurisdiction will be contacted about your data folder that is now loaded on a secure server. In your jurisdiction’s folder you will find three datasets as described in the data dictionary and an electronic version of the data dictionary. You or the contact whom you have named will be contacted shortly by me followed by an e-mail from our MCR vendor, Erika Wilson of Westat Inc., with information on how to access your data. Our data exchange agreements with other states and the Veteran’s Administration hospitals have restrictions on rerelease of data reported from them to the MCR. Interstate agreements require us to not rerelease data that we received solely from certain other states. The states that do not allow us to release data to Local Health Officers are Delaware and Texas. In addition, the Pennsylvania restricts the release of any address information on cases that Pennsylvania reports to us. In a separate e-mail to each jurisdiction, I will send a tally of how many cases cannot be released and are thus not in your data sets. We welcome any questions that you may have as you review the data. If you or your personnel have questions or need additional help or training on the use of these datasets, please contact me. I may be reached at [email protected] or 410-767-5459. Thank you. Sincerely, Jennifer Hayes, MEd, MPH Senior Epidemiologist, Maryland Cancer Registry (MCR release# 08-12) Toll Free 1-877-4MD-DHMH • TTY for Disabled - Maryland Relay Service 1-800-735-2258 Web Site: www.dhmh.state.md.us Maryland Cancer Registry Cancer Incidence Data Data Dictionary for Local Health Officer Data Sets August 2008—Updated February 2010 Introduction....................................................................................................................... 2 Reportable Tumors........................................................................................................... 2 Who Reports Cancer ....................................................................................................... 3 Description of Files ........................................................................................................... 3 Data Confidentiality.......................................................................................................... 4 Case Definition .................................................................................................................. 4 Additional Information .................................................................................................... 4 Data Dictionary .................................................................................................................5 Appendix............................................................................................................................ 8 Primary Site................................................................................................................... 8 Histology ICD-O-3 ...................................................................................................... 18 Cancertype................................................................................................................... 36 Maryland Cancer Registry Cancer Incidence Data Data Dictionary Introduction The Maryland Cancer Registry (MCR) is a unit of the Center for Cancer Surveillance and Control of the Maryland Department of Health and Mental Hygiene (DHMH). The MCR is providing these data to Local Health Officers under the provisions of COMAR 10.14.01.05.B. Which tumors are reportable in Maryland (2006 and beyond)? The MCR is a computerized data system that registers all new cases of “reportable” human cancer diagnosed or treated in Maryland. Reporting Requirements in Maryland can be found at http://www.fha.state.md.us/cancer/registry/html/reporters.cfm Reportable tumors include: Reportable All malignant and in situ tumors (behavior code of 2 or 3 in ICD- Diagnoses O-3*) Intraepithelial neoplasia of the following sites (abbreviation and ICD-O-3 codes): vaginal squamous intraepithelial neoplasia (VAIN 8077/2), vulvar squamous intraepithelial neoplasia (VIN 8077/2), and anal squamous intraepithelial neoplasia (AIN III 8077/2) All non malignant primary intracranial and central nervous system tumors including juvenile astrocytoma for primary sites including the brain, the cauda equina, a cranial nerve, the craniopharyngeal duct, the meninges, the pineal gland, the pituitary gland, or the spinal cord Neoplasms involving plasma cells Squamous or basal cell cancers of genital skin sites Exclusions Squamous or basal cell cancers of non-genital skin sites (NOT Cervical carcinoma in situ (diagnosed in 2006 or after) reportable) Intraepithelial neoplasia of the following sites (abbreviation and ICD-O-3 codes) (diagnosed in 2006 or after): cervical squamous intraepithelial neoplasm** (CIN III 8077/2), and prostatic glandular intraepithelial neoplasia (PIN 8148/2) Borderline malignancies of the ovary (diagnosed in 2006 or after) *ICD-O3: International Classification of Disease for Oncology, Third Edition ** CINIII was reportable for cases diagnosed prior to 2006 diagnosis year Health Officer Data--August, 2008_Updated February, 2010 2 of 45 Maryland Cancer Registry Cancer Incidence Data Data Dictionary Who reports cancer cases to the MCR? Reporting facilities are required to submit data on all new reportable cancer cases to the MCR. Reporting facilities include hospitals, freestanding ambulatory care facilities, laboratories, freestanding radiology centers, and physician’s offices in Maryland. In addition, data exchange agreements with neighboring states and the District of Columbia provide the MCR with data on Maryland residents diagnosed and treated out of state. The MCR can only release data to Health Officers in each jurisdiction if the data exchange agreement allows this release. What files will be in each county’s folder on the portal? Each county will have a portal folder that can be found on the web address supplied by Westat. In your folder you will find three Microsoft Excel files (and one electronic copy of this dictionary) on cancers or other reportable tumors where the individual case had an address at diagnosis in your jurisdiction. The files contain cases reported to the MCR as of December 2009 with diagnosis year from 1996—2007. The three Microsoft Excel files and Data Dictionary file are as described below: The “County” incidence 2010 for release.xls file includes all invasive cancer cases (ICD-O3 “behavior code” of “3”) and the in situ bladder cases (ICD-O3 behavior code of “2”). All human invasive cancer cases (ICD-O3 “behavior code” of “3”) and the in situ bladder cases (ICD-O3 behavior code of “2”) are the cases that Maryland uses to calculate annual invasive cancer case numbers and rates. Note, for skin cancer, squamous and basal cell cancers are not reportable. The “County” in situ 2010 for release.xls file contains the in situ cases (ICD- O3 “behavior code” of “2”) for all cancer sites except bladder. The “County” benign 2010 for release.xls file contains the benign central nervous system tumors and ovary borderline benign tumors (ICD-O3 “behavior code” of “0” or “1”), reportable in Maryland if date of diagnosis was after October 2001. DataDictionary_histology_psite.pdf is an electronic version of this data dictionary. Health Officer Data--August, 2008_Updated February, 2010 3 of 45 Maryland Cancer Registry Cancer Incidence Data Data Dictionary Are these data confidential? Can they be used to find and contact patients? The data files contain confidential data. Even though name of the person with cancer is not in the files (see data dictionary), the address and other confidential identifying information is line listed on this disk. According to the Agreement between each Health Officer and the DHMH MCR, the data you receive are only to be used for planning and surveillance activities. If you will be working with these confidential data, you need to have signed a Confidentiality Agreement. In accordance with the MCR Data Use Policy, you may not present or release tables or reports of line listed data or reports containing cell counts with 1-5 cases in a cell or rates based on 1-15 cases in the numerator. Prior approval is needed by the MCR and, if necessary, the DHMH IRB, in order to contact patients in any manner or to rerelease these data to researchers. Are these listings of cases of cancer or of people with one or more cancers? A cancer “case” represents a single occurrence of cancer, not a single person. A person with more than one reportable tumor is listed by each tumor. Consequently, the data represent the number of cancers, not the number of individuals. Where can I get additional information? If you have any questions or need additional information, please call the MCR office at 410-767-4055. We will be happy to help you. Health Officer Data--August,
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